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I have a butterfly on my right hip, I got it when I was 23. None of my docs had a problem with it. I do remember when I first got it one of the docs saw it and told me that alot of the CF pts she knew had butterfly tattoos--I thought that was kind of funny.

I agree with Emily. My mom took me everywhere. Obviously you dont want to expose your child to illness but its important for the baby to build up his/her immune system. Plus, we know its so important for CFers to stay active and by keeping your child too protected, it may hinder his physical...

In response to Maria, I was first cultured a few years ago and I had not noticed any new symptoms so I was kind of suprised at this new thing I was growing. Alot of doctors have different opinions about treatement, so for me that was the difficult part. If I remember correctly, I tried a few...

I work in ultrasound in a Center for Fetal medicine and Prenatal Genetics, we do many CVS procedures for all different reasons. Generally they are performed between 11-14 weeks. The test is either done thru the abdomen (like an amnio) or thru the cervix, depending on where the placenta is...

Hi Melissa, I think you are probably talking about stenotrophomonas maltophilia. I have cultured this. Here is a link to a website with info. I hope this is helpful, if not just try to google it, there is a lot of info. http://www.cysticfibrosismedicine.com/htmldocs/CFText/stenotr.htm

I also get tired alot especially when Im sick. I wonder if it is due to the fact that most of us probably dont ever get a restful nights sleep. I mean we all cough and Im sure coughing and having difficulty breathing must effect the bodys REM sleep, which is where you get your most important...

I was before when I was younger. I developed an allergy to bactrim--all the skin on my hands and feet blistered and peeled off...not pleasant at all. Usually now I just do cipro alone now and it never helps at all for me either. I hope you see some improvement soon!

I am also double Delta F508 however I have taken pancrease since birth. In fact, now that Im older I have to rely on them even more. But, remember that even though we may have the same gene mutation each case of CF is so individual your son may in fact have a pancreas that works fine. Good...

I often have dizzy spells but I have been told it is related to a medicine I am on for esophageal varices and my liver--So I think its probably a different issue for me. But I know how you feel....its not fun!

Boston, Mass

Hey girls, I had to jump into this conversation because Im switching to Carolyn Donovan soon. I too am someone who likes to talk a little bit about things other than CF at my appts....I think that is important! Im always talking and joking with the docs, nurses and PFT people. Hopefully I...

Nope, I definately need those good old enzymes!! Not having to take them sounds great--but only if you are still healthy and maintaining a good weight and stuff. Keep an eye on that!

Hi Im Jaime. Im 26 years old and I live in Salem, Mass (yes, the witch city!) Salem is about 20 minutes north of Boston. I have an older brother Jake, he is 28. He does not have CF and is not a carrier either which is great! I work doing ultrasound in Boston at Brigham and Womens...

Hey Caitlin and Nicole, Im going to start seeing Carolyn Donovan soon (I see Dawn Ericson now). Im glad you hear you guys like her!! And I totally hear you all about being scared of Dr. Wohl!! She is very intimidating, but a superb doctor!

I had one. I was diagnosed at birth due to meconium ileus and a little later had a sweat test to confirm.

Hi, I too live in Massachusettes. I dont remember being involved in any early intervention programs, but that was 26 yrs ago so alot has changed. Definately the best way to find out would be to go to your CF centers social worker, I always found mine to be extremely helpful with lots of stuff...

Hi again Caitlin, So I went to the CF night on tuesday. Craig Gerard talked a bit about the Brigham program, about what it will entail and switching docs and stuff. Nothing that I didnt already know but still good to hear formally. There will be a different clinic day at Childrens for...

Hi melanie, I will email you!

Oh yea, and they do have internet in all the rooms. And I belive if you dont have your own computer they will let you borrow a laptop. Where do you live?

Actually the bronch was awful!! I have never had one so bad. They said that there is lots of adhesions and stuff and they really moved alot of stuff around so I have had lots of chest pain. I was really sick vomiting and I had a fever until friday. Then my heartrate was relly low (like about...